Women with AIDS in New York City: hidden diagnoses and higher death rates

Women and AIDS in New York City:

Hidden Cases, Hidden Problems

Ask most people what group of people you think of when you think of AIDS, and most people will name gay men. While it's undeniable that the AIDS epidemic was first noticed among gay men, AIDS has become an equal opportunity illness, and currently women represent the fastest growing sector of people with HIV / AIDS in the United States. This fact is true in New York City as well.

The growth in the rate of HIV / AIDS among women in New York City is a growing concern for a variety of reasons. Worse than the increase in infection among women is the death rate. Although overall, the death rate from AIDS has dropped significantly, the death rate for women with AIDS is significantly higher than that of men.

How widespread is the problem?

A look at recent history begins to show how the problem of AIDS is growing among women. Christina Gorman of TIME magazine reports that from 1991 to 1992, the infection rate for women jumped by 10%. During that period men showed only a 2.5% increase. Women were being infected with HIV four times as often as men. This reflects the fact that AIDS is no longer a "male gays only" illness. Some women have boyfriends or husbands who are bisexual, and a significant number of women become infected because of intravenous drug use by either themselves or their sex partners. Complicating the situation further, the majority of these women are mothers, often single.

The special concerns of women

Because AIDS presents differently in men than women, some suspect that AIDS sometimes goes undiagnosed longer in women than men. Chris Morris, who wrote an article on the topic for Ms. Magazine, reports that a significant rise in female deaths between 1981 and 1986 in the Mid-Atlantic States, including New York, has not been fully explained. While some were attributed to AIDS, others were disproportionately attributed to tuberculosis, influence, pneumonia, and pelvic imflammatory disease. It is now known that deaths all these conditions are more common in people with AIDS.

Dr. Aliyah Morgan, medical director of the Woodhull/Bushwick Health Center in Brooklyn, reports that most women become infected with the HIV virus through their sexual partners. Often the women come into the center complaining of some king of gynecological condition that may not initially alert the doctor to the possibility of AIDS, in spite of the fact that some of these conditions have been present for an extended period of time and have been markedly resistant to treatment. Other unusual conditions include the secondary stage of syphilis. Until AIDS moved into the female population it was rarely seen in women, according to Ms. Magazine. Morgan notes, "Typically, they do not fit the Center for Disease Control's definition of AIDS, because they suffer from a variety of "female disorders" that are not considered by the CDC."

Although it is clear that AIDS often presents differently in women than in men, treatment modalities have not been adequately tested in women, according to some, and it is possible that women's bodies may react significantly differently to standard treatment than men's do.

AIDS and Childbearing: Hard Questions to Answer

Motherhood has always been one goal of many young women. The desire to bear and raise children does not evaporate with the diagnosis of HIV or AIDS, but those circumstances can complicate both pregnancy and motherhood.

Until fairly recently, women with AIDS were actively discouraged from having children. Advances in the treatment of HIV have included increased understanding about how to protect the developing child from the risk of AIDS. Nevertheless, pregnancy still holds significant risk of receiving HIV from the mother. While information has increased, the choice continues to be a difficult one.

The issues are many. CRIA reports that women with very low viral counts may face only a 2% risk that their HIV will be passed on to their developing child during pregnancy. Unfortunately, a lot of women do not realize they are HIV-positive until their viral rate is high enough to put the baby at considerably increased risk. While some medication regimens can reduce the viral count, the meds are untested in early pregnancy and it is not known if they present a deformity risk for the fetus. Women who know they are HIV-positive are advised to stop medication during the first three months of pregnancy, but that increases their risk of becoming sicker. The pregnancy of an HIV-positive mother-to-be has to be carefully monitored, as standard practices such as amniocentesis, episiotimies, and catheters can increase the risk of infection to the baby.

Motherhood and HIV / AIDS

Parents with HIV or AIDS have to face the grim fact that they may die well before their children are grown and ready to be on their own. Since many HIV-positive mothers are single, planning for their children includes difficult choices and decisions. Unfortunately, feelings of shame complicate the problems these mothers must solve. There is still tremendous stigma to either having AIDS or to being part of a family where someone has AIDS, and many mothers know that their high-risk behavior caused this problem. They are embarrassed by their situation. Gorman (TIME magazine) quotes a Bronx activist for mothers with AIDS, Marina Alvarez, who says, "information dispels fear."

TIME's report shows that at least 30,000 children in the U.S. have lost one or both parents to AIDS. This number will at least triple before the next decade is over. Many of those children lost or will lose their only parent. Of those children in two-parent families, often both parents have AIDS. Gorman tells the story of "Nicole," who lost both her parents after her father infected her mother with HIV. She now lives in New York City with an aunt, but other such orphans end up in foster care or even homeless.

One New York City agency trying to provide homes for these orphans is the New York Council on Adoptable Children, which has placed over 300 children in permanent homes since 1993. Unfortunately New York City doesn't have nearly enough resources to place these children. It is estimated by the Harvard AIDS Institute (HAI) that by the end of last year, New York City had over 52,000 AIDS orphans. According to HAI, many of these children cannot be taken in by relatives because of the difficulty of finding affordable housing for larger families in New York City.

AIDS: The Financial Crisis

The Agency for Healthcare Research and Quality (AHRQ) has tracked costs related to AIDS and HIV. They report that the Center for Disease Control, in 1996, concluded it cost about $22,500 per patient to treat HIV-related diseases. Also according to AHRQ, most people with HIV rely on public sources for needed healthcare services. AIDS and HIV represent a significant cost to our public health services network. Poor single mothers who are most likely to have HIV or AIDS are also as a population less likely to have secure jobs with good health benefits. The cost of their treatment has to be absorbed by city services and other agencies, creating a constant and significant financial drain.

In the next decade, New York City will have to find solutions to these multiple problems: providing adequate diagnosis and treatments for women with HIV or AIDS; finding homes for children left parentless by AIDS; and solving the unexpected housing and financial challenges of the families of these children so they do not have to become wards of the state.

Where to Find Help in New York City

In addition to the New York Council on Adoptable Children, New York City has a variety of agencies trying to meet the needs of people with HIV or AIDS, including the special needs of women with AIDS. One example of such an agency is the Brooklyn AIDS Task Force. One of the oldest such organizations in the region, they provide case management, a food pantry, nutritional advice, informational publications, referral to other needed services as needed and educational programs for populations at higher risk for acquiring HIV. They try to focus on people with AIDS who have no other resources, such as the working poor, people without health insurance, and the homeless population of Brooklyn.

For a comprehensive list of services available to people with HIV or AIDS, go to the Internet: http://www.aidsnyc.org/links.html.

Solving the growing crisis in New York City for women of AIDS diagnosis, long-term treatment, and provisions for children in case the mother cannot raise them to adulthood herself

Sidebar: what is HIV / AIDS?

HIV, or Human Immunodeficiency Virus, is caused by a virus that invades the person's immune system, weakening it and eventually leaving its victims significantly more vulnerable to diseases a person without the virus could fight off. When HIV progresses to the point that the person begins contracting these opportunistic infections, which are often very hard to cure, doctors then say the person has AIDS, or Acquired Immune Deficiency Syndrome.

The HIV virus is spread through body fluids, including blood, semen or vaginal secretions, and even breast milk.

There are several ways to acquire the HIV virus, including sex with someone who has the virus (HIV-positive individuals), sharing needles (or in some countries, from needles used in hospitals that re-use contaminated medical tools such as needles), infection of children by mothers during pregnancy, birth or by nursing, and to a lesser extent in recent years, from transfusions. Currently all donated blood is routinely tested for presence of the HIV virus.

HIV-positive individuals may not show symptoms for a very long time, even years, making it important that people at risk for the disease, including intravenous drug users and people with multiple sex partners, be regularly tested, so they can avoid spreading the virus to others.

Sumptoms include: lingering unexplained fevers or diarrhea; unexplained loss of weight; severe fatigue; swollen glands; and even neurological signs such as balance problems or difficulty thinking clearly.

Unfortunately some people are not diagnosed until the HIV has progressed to AIDS and the person has some secondary infection typical of AIDS such as Kaposie's Sarcoma, a skin cancer, or some typically rare forms of pneumonia.

HIV can be treated to delay the onset of AIDS, sometimes for many years. AIDS cannot be cured, but effective therapies have been developed that both extend life and improve the quality of life for those with AIDS.

Preventative practices can greatly reduce a person's risk of acquiring the HIV virus, such as using clean needles and other paraphernalia if a drug user, and safe sex practices - the use of condoms.